A little more living…

A few years ago, I began taking a drug called Kevzara. This drug, for me, was a miracle. For the first time in years, I saw my ankles on a consistent basis. My swelling decreased significantly and I felt pretty good. At one point, I was walking 5 miles a day, losing weight, and feeling good physically and mentally. About a year ago, I saw an increase in swelling and pain. The pain became so bad that I wasn’t sleeping. Walking became very difficult, so much so that my cane is permanently in my car in case I need it in the community. The shot that was my miracle, suddenly only gave me relief for 2-4 days. I was heart broken.

My rheumatologist and I decided to try another drug. I’ve only taken two drugs in the 20 years that gave me no relief at all. Taltz didn’t help me. I’m sure it helps a lot of people, but I struggled. It got so bad, I called my rheumatologist in tears begging to go back on Kevzara. I did, and relief was almost immediate for pain and swelling for the first two months. Now the drug gives me 4-8 days of relief during a month. That is it. The rest of the time, I struggle to walk, shower, sleep, get out of bed, get dressed, and the list goes on. Even thought my quality of life has decreased, I was hesitant to give up Kevzara. I can honestly say it is the only drug that I felt might be my miracle. I had more success on this drug than any other.

So far, to treat my autoimmune arthritis, I’ve taken:

  • Humira
  • Enbril
  • Cymzia
  • Orencia
  • Stelara
  • Taltz
  • Actemra
  • Xeljanz
  • Consentyx
  • Kevzara

I used to say I failed on all these medications, but after years of med failure, I realized that I didn’t fail. The drugs failed me over time. What is next? My rheumatologist recommended Remicade. An IV infusion biologic drug, which my insurance immediately rejected because it isn’t on their formulary. Instead, I am going to be approved for a biosimilar drug. This is the first time the brandname drug has not been approved by my insurance. For years, they have tried to persuade me, but my rheumatologist fought it. This time I was only approved for Inflectra. I trust my rheumatologist completely, but I am nervous to take IV drugs again. Years ago, I was getting a biologic infusion drug and I had a horrible reaction. A rash and rapid drop in blood pressure caused me to lose consciousness. Since then, I only took self-injectables. As scary as that experience was, I was devastated that I had to stop taking a medication that gave me relief and allowed me to see my ankles for the first time in 10 years.

Common side effects from Inflectra include:

And let’s not forget the big one: Inflectra may cause a rare type of lymphoma (cancer) of the liver, spleen, and bone marrow that can be fatal.

I remember before going to war with my autoimmune system, I was very cautious about what went into my body. The first year of my diagnosis, I refused medication and tried every holistic approach, exercise. and diet under the sun to make myself better. It wasn’t until I took a cutting edge medication that I found relief and realized how foolish I had been.

Do I like taking medication? Not at all. Do I do it anyway? Yes. It has never been an easy decision, but one I’ve made because living with intense pain is exhausting, depressing, and is very hard. I want a better quality of life. So wish me luck that my journey leads to less pain and more living.


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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

2 thoughts on “A little more living…

  1. Wow, I am up to six different tried and failed: Cymzia (9 mos), Orencia (15 months), Reimicaide (68 months), Symphoni (24 months), Actemra (15 months), and the current winner – Rituxain (110 months).

    Heck, I thought i was the king of failures. But shoot, I am not evne in the same gall park. 🙂

    Liked by 1 person

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